Epilepsy Foundation of Metropolitan New Yorkhttp://www.efmny.org
Sat, 10 Dec 2016 03:15:53 +0000en-UShourly1Community Spotlight: Epilepsy Road Warriors Take on the NYC Marathonhttp://www.efmny.org/blog/2012/10/community-spotlight-epilepsy-road-warriors-take-on-the-nyc-marathon/
http://www.efmny.org/blog/2012/10/community-spotlight-epilepsy-road-warriors-take-on-the-nyc-marathon/#commentsTue, 30 Oct 2012 16:57:34 +0000adminhttp://epilepsynyc.com/?p=268Continued]]>From all of us at EFMNY: Our thoughts are with everyone who is recovering from Hurricane Sandy. Currently, our servers are down and our power is out. You can still access our site. However, our staff are unable to access email. We hope to be up and running as soon as possible.

National Epilepsy Awareness Month in Metro New York

As November, National Epilepsy Awareness Month, approaches, we wanted to share some of the ways in which our community is coming together to raise awareness and fund epilepsy education and empowerment programs. You may have read our last post about Team Gabriella and our 1st Annual Into the Light Walk for Epilepsy Awarenesson Saturday, November 10th in Hudson River Park (NYC). We’re also excited to introduce you to the Epilepsy Road Warriors, our first team to run the NYC Marathon this Sunday, November 4th. Here are the opening paragraphs of their personal stories. To read their full stories and to learn more about how you can support the team, please visit our team page by clicking HERE or by clicking on each team member’s name below:

The call came early one morning two years ago. My brother, sister-in-law and four year old niece, Siena, were at the hospital. Siena had a grand mal seizure the night before. Paramedics were called and struggled for over 45 minutes to stabilize her. We were stunned. There was no indication prior to this day that she had Epilepsy. There was no family history. This caught us all by surprise.

I was diagnosed with complex partial epilepsy 16 years ago. Regardless of all the ups and downs along the way, I still consider myself to be very fortunate that my condition is very well controlled with medication. To me, no one is perfectly healthy (really); my brain just likes to tease me with unusual signals once in a while, which leads to a seizure. But with such great support from amazing people in my life, nowadays when it happens I have learned to stop asking what I did wrong to deserve this (okay, I usually bitch about it a little bit), get up and move on.

As a physician – I always thought I understood Epilepsy. I understood the different seizure types. I understood the medications and their side effects. What I didn’t understand was the impact that Epilepsy has on those that suffer from it. That changed when my beautiful and healthy daughter, Nora, suffered her first grand mal seizure at the age of 5. My life and views on everything changed that day.

I first joined New York’s epilepsy community as a professional in 2004. In that capacity, I had the opportunity to work with hundreds of individuals and families affected by seizure disorder. I also became close friends with a co-worker whose father was diagnosed with epilepsy when she was six-years-old. Together, we share a commitment to raise epilepsy awareness, so that people affected by seizures have access to the best treatments, services and quality of life possible.

First, let me explain the grainy photos. They were taken in May, 1981. That’s me and my father running a 10k when he was 33 and I was 6. His favorite moment was when I bent down and kissed the 4 mile marker. A few months after the race, I woke up one morning to find my father convulsing on the floor. I didn’t know that he had had seizures as a teenager, seizures that were vitually ignored at a time when people didn’t want their families associated with epilepsy. I woke my 10-year-old sister and we called our neighbors.

I had my first epileptic seizure when I was seventeen years old. Up until that point, I had never really had any kind of health issue whatsoever. I suddenly went from being able to do basically anything I wanted to being worried about being able to drive, being left alone or even something as mundane as taking a shower. My family was worried sick, and really had no idea as to where to turn or what to expect.

On December 9, 2011 the world was granted an angel, my cousin Mary Kate Szokoli. She was 30 years old and lost to her battle with epilepsy. I am running in the NYC marathon on November 4 in honor of her. I have set a goal of raising $2,500 for the Epilepsy Foundation so that others my become aware of the impacts and educated on living with Epilepsy.

Heres our story I was 13yrs old when I was diagnosed with epilepsy and have been living with it ever since. I am very happy to say that I have been seziure free for 2yrs now. Great right? Well a couple of years ago my little 9yr old sister was diagnosed with epilepsy it crushed my heart I always thought better me then my sisters to have to live with this. Then our other sister had a great idea and started a team called C & E Warriors to encourgae us to walk for the cause on November 10 and to honor her sisters that have to live with this disorder.

At the Epilepsy Foundation of Metropolitan New York, we have the opportunity to work with the metro area’s leading health providers and advocates as well as extraordinary individuals and families affected by epilepsy. That’s why we’re excited to introduce the first in our Community Spotlight series. This series will highlight the exciting efforts being made within our community each day to increase epilepsy awareness, education and empowerment. This first edition features the story of Team Gabriella as told by her mother, Karen Mendez.

To join Team Gabriella and EFMNY for the 1st Annual Into the Light Walk for Epilepsy Awareness on Saturday, November 10th in Hudson River Park, visit www.epilepsyintothelight.org. For more information, email tpowers@efmny.org or call 212-677-8550.

Gabriella’s Story by Karen Mendez

On December 27, 2007 God blessed me with a beautiful baby girl who I named Gabriella Ashley Mendez. At the age of 2, Gabriella would have these violent awakening episodes which the doctor said were night terrors. At the time, they believed they were normal and that she would grow out of it. But, I knew that something wasn’t right with my baby. Tests were done and the doctors told me that Gabriella was having seizures! SEIZURES?? I felt like my heart was ripped from my chest! Gabriella was diagnosed with Intractable Epilepsy. This means that her seizures cannot be controlled. My heart aches every day having to watch Gabriella go through this. As her mother, I feel helpless knowing there’s nothing I can do to help her while she’s trying to fight through the seizures. They say God will not give us more then we can handle. Because God has given me the strength, I WILL continue to fight for Gabriella and other children like my daughter. That’s why I’ve started Team Gabriella with family and friends to walk in the 1st Annual Into the Light Walk for Epilepsy Awareness on Saturday, November 10th. You can join us or make a donation to support Gabriella by visiting www.epilepsyintothelight.org.

The team at EFMNY would like to thank you for your questions! After each post, we’ll post answers from our experts to the most frequently asked questions we receive. Please note that these Q&A post, like our provider articles, should not be taken as medical advice. Each patient is unique. For medical advice regarding your specific condition, please consult your doctor.

Q&A with Patricia McGoldrick, NP, MPA, MSN:

1. I just found out that one of the medications I’ve taken for years is available in generic form. If it’s only one of the two medications I take, is there less risk in trying the generic?

This is difficult to answer without knowing which medications you are taking. Some of the medications in generic form are made by the same companies that make the brand name medications and so are consistent. The answer depends on the medications, the doses, how long you have been seizure free and a host of other issues. Please ask your provider, as he or she knows you best!

2. My daughter had surgery earlier this year. We were hoping that she would be medication free. However, she is still on meds. Is this typical for kids who have had epilepsy surgery?

The type of surgery, the medications, the length of time after the surgery and the cause of the epilepsy must all be taken into consideration, as well as the EEG findings and the post-operative MRI findings. Typically, medications are considered for some period of time after the surgery. Again, this is a great question for your provider!

3. There are a lot of websites with information about side effects and drug interactions. A lot of it can be overwhelming. What do you recommend as the best resource for people who want to know everything they can about their epilepsy medications?

The best source of information is not the internet or your friends- it is your provider, who has access to peer-reviewed journals and the latest studies. Much of the information on the internet is flawed and unreliable.

4. My new medication makes me very tired, but my doctor says it’s one of the best for my type of seizures. Are there ways to counteract these kinds of side effects over time?

The rule of thumb for treating epilepsy is to use the medication that controls the seizures and does not have unmanageable or intolerable side effects. If the fatigue is interfering with functioning then you may want to either change the medications or change the time of administration. If you are still having seizures, AND having side effects, then it is definitely time to discuss with your provider. Just because the medication is one of the BEST for your type of epilepsy, does not mean that it is the ONLY medication.

5. I am now 41, still living in Stafford. Today, I have lost some more hair!! Now not only can you see the scars from the three operations I’ve undergone, but you can also see the scars from tests I underwent in 1989! How can I get rid of them?

Hair loss is certainly a side effect of some of the medications! We recommend a zinc based shampoo and zinc supplementation daily to reduce hair loss. You can use vitamin E cream to apply to the scars and should also discuss with your surgeon regarding other products or additional plastic surgery to get rid of the scars.

The typical rule of thumb is that medications should be switched if they are ineffective. Once a person has been on the appropriate medication for their type of seizures, and has reached the appropriate or maximum dose and is still having seizures, the medication should be changed. Usually a second medication is added and then “titrated up” (that is adjusted in a step-wise progression) until seizure control is reached or the maximum dose of the second medication is achieved. If seizures are under control, consideration should be given to weaning the first medication. Having said that, there are often instances when seizure control is reached with two medications used in combination and the person with epilepsy remains on two medications. The risk of seizures and injury must be weighed against the risk of side effects.

Should medications be changed if there are side effects?

The important thing to remember about side effects is that they MAY occur, not that they will! Medications are tested in clinical trials in large groups of persons. Every event that occurs during the time of the trial is reported as a side effect, even if the event occurs only in one or two persons and is not conclusively determined to be a direct effect of the medication.

Often side effects occur when the medication is first initiated and may lessen or resolve over time as the person’s body “becomes used to the medication.” A prime example is the side effect of drowsiness that occurs with oxcarbazepine and usually resolves within a week or two. Another is the abdominal upset that can occur with ethosuximide and is managed by eating before the medication is taken. On the other hand, intolerable side effects should result in changes of medications.

Should generic medications be used?

As a general rule, in he treatment of epilepsy, most providers favor the use of brand name medications. This is for several reasons:

there has been no testing in generic medications to determine the time before maximum concentration of the medication is reached

there has been no testing in special populations –these include children, the elderly and the developmentally delayed

bioavailability can vary, since the only requirement with generic medication is that there be 90% bioavailability between 80% and 125% of the BRAND NAME medication for the first generic formulation. There are no formal generic-to-generic studies and therefore different generics can vary widely in their bioavailability

there is no testing of generic medications in patients on more than one medication, so there is no data on potential drug interactions

The team at EFMNY would like to thank you for your questions! After each post, we’ll post answers from our experts to the most frequently asked questions we receive. Please note that these Q&A post, like our provider articles, should not be taken as medical advice. Each patient is unique. For medical advice regarding your specific condition, please consult your doctor.

Q&A with Dr. Fred Lado:

1. I lost my driver’s license due to seizures. If I switch medications or add a new medication, how long will it take to demonstrate that I can drive? Is the decision up to my doctor or the State?

The rules that govern whether and when an individual may drive are set by each state (Click HERE for more information). In New York State, individuals are required to be seizure free for 12 months before they may drive. If a seizure occurred because an individual reduced a medication on the orders of a doctor, it may be possible to resume driving sooner (after receiving approval of the NY Dept. of Motor Vehicles). Switching medications does not alter the time an individual may not drive.

2. I am now on two medications, and I’ve been doing better. I still have seizures every 3 or 4 weeks. Is it risky to add a third medication at this point?

The biggest improvement in seizure control usually occurs after starting the first medication. The second medication will also usually make a noticable difference in seizure control. The third medication may also help, but less than the first two. Taking more than three medications is unlikely to improve seizure control, but may increase side-effects. The chance of side-effects, particularly drowsiness, increases with each added medication. Most side-effects are reversible, meaning they will go away after reducing or stopping the new medication. There is always a chance of rare side-effects when starting a new medication, but one has to balance the risk of further seizures against the low risk of a rare side-effect.

3. My sister and I both have seizures, and we’re on the same medication. She’s experienced a lot of side effects, but I haven’t. Is there a reason why some people react so differently to the same medication even when they’re related?

Even though two people are related, they still have different inherited genetic traits. People may be different in how quickly the body metabolizes and eliminates the medication, or in how readily the medication passes out of the blood into the brain, or in how effectively the medication works at the target proteins in the brain. One of the exciting areas of research now is to figure out whether understanding each individuals genetic makeup will help us choose the medications that are most likely to work in controlling seizures. These studies are still in the very early stages, but may pay off in the future with better matching of medications to each individual.

4. I’ve been on medication for the last five years without having a seizure. My doctor thinks it’s time to start going off of my medication, but I’m terrified I will have seizures again. Is that a possibility after all this time?

The decision to reduce or stop a medication is complex, and often produces anxiety. The likelihood of having a seizure after stopping medication depends on many factors, including the type of epilepsy, age of onet, and whether there is a structural injury or abnormality in the brain. As with most complex decisions, there is usually no single “right” answer. For some individuals with good seizure control and no side-effects, taking a medication offers a measure of security and protection, and one can reasonably ask “why rock the boat”. For other individuals, the medications may produce unwanted effects – and reducing the side-effects is worth the (hopefully small) risk of another seizure. I suggest preparing a page with the “pros” and “cons” of stopping the medication and then discussing the decision with your doctor.

5. I’ve heard that if you go off of your medication too quickly that it can cause seizures. Is the time it takes to go off a medication different for each one? Does it depend on the dose and how long you’ve been on the medication?

It is true that abruptly stopping some seizure medications can result in a seizure. The risk is greatest for individuals who have been taking a high dose of medication for longer than a few months. Unless there is a urgent need to stop a seizure medication, such as liver toxicity or an allergic reaction, the safest way to stop a seizure medicine is to reduce the dose in steps once a week or every few days. Phenobarbital should be reduced even more slowly. If someone is having a serious side-effect and the medication must be stopped abruptly, a doctor may substitute a medication such as lorazepam (brand name Ativan) temporarily, or may even hospitalize an individual if the side-effects are serious or there is a high risk of seizures.

There are two circumstances when one should consider changing medications, when the medication is not completely effective in stopping seizures, and when the medication is producing unacceptable side effects. Cost of a medication may also be a reason one must consider switching to less expensive medication. One should not, however, switch from a well-tolerated and effective medication to a different medication just to try the newest medication, or in response to advertising, or on the advice of a friend or acquaintance, since the effectiveness and side-effects of the new medication are difficult to know in advance and may result in worse seizure control or new side effects. For those individuals taking one or two medicines who are still having seizures, your doctor may recommend adding a seizure medication rather than switching from one medication to another. Taking more than three seizure medications, however, rarely improves seizure control but often results in more side effects. For individuals taking two or three medications, switching out one medication to try another medication is the usual recommendation.

What are the risks of switching medications?

Switching medications involves risks, namely the possibility that seizure control will worsen, or that the new medication will cause unanticipated side-effects. Since usually one is undertaking a medication switch because of either poor seizure control or side-effects, it is sometimes difficult to know whether the possible benefit of changing medications outweighs the risk. This is a very individualized decision, since each individuals lifestyle and seizure type are important factors. For example, if one individual has seizures occurring several times a month, then the benefits of a medication switch outweigh the risks of worsening seizure control, since seizure control is already poor. On the other hand, if another individual has a seizure once every 1 to 2 years, then the risk of worsening seizure control is a greater concern. One may still want to change medications to achieve complete seizure control, for example, to obtain a driver’s license. However, this individual and their doctor may approach the switch more gradually, first adding the new medication to the old one, and then after sufficient time – even 1 or two years – gradually tapering the older medication.

Most medication side-effects, such as dizziness, stomach upset or sleepiness, are dose-related; that is they usually occur with higher rather than lower doses of medications. Medication allergies resulting in itchiness rash, however, as well as some rarer side-effects such as severe burn-like rash, liver or bone marrow toxicity, may occur unpredictably with some medications. The risk of these rare side-effects should be considered when deciding whether or not to switch medications.

Are some medications better than others?

In some instances, specific medications are known to be especially effective for particular seizure types. Juvenile myoclonic epilepsy often responds best to valproate, for example. It sometimes happens that the type of seizures or epilepsy an individual has is not entirely clear at the beginning. Later on, when the epilepsy syndrome and type of seizures becomes clear, there may be a clear benefit in changing seizure medication to a medication known to be effective.

In most cases, however, most seizure medications are similarly effective, at least when tested in large clinical trials. However, even though medication A and medication B may be similarly effective in a clinical trial involving hundreds or thousands of patients, the two medications may be quite different in any one individual. The catch is that – at least for now – doctors can’t be sure whether any one individual will have that same, better or worse seizure control when trying a new medication. The picture is a little bit clearer when it comes to side-effects, and often your doctor will recommend a new medication to avoid the risk of specific side-effects. Some medications pose known risks that an individual wishes to avoid. Valproate, for example, poses a significant risk to the developing fetus in pregnant women. Phenobarbital and phenytoin can produce significant bone demineralization resulting in osteoporosis and increased risk of bone fracture. Topiramate and zonisamide increase the risk of kidney stones. Avoiding one of these risks may be particularly important for some patients but not others. A young woman interested in becoming pregnant will want to switch valproate for a medication with fewer risks to a pregnancy, while a male patient or woman not of child bearing age may have no concerns about these side-effects.

How do the milligrams in one medication compare to the milligrams in another.

One should not compare the milligrams in one medication to another because the molecules in each medication may be very different so that a few milligrams of one medication may be equally potent as many milligrams of another medication. For example, 300mg of phenytoin a day may be a usual dose, while an equivalent dose of levetiracetam may require 3000mg, a ten-fold increase in milligrams. Your doctor will try to find the lowest dose of medication that stops seizures while trying to avoid side-effects.

How can medications be switched safely?

There is no single ‘best’ way to switch medications, rather safely switching medications requires close cooperation and communication between doctor and patient. In cases where seizures occur rarely, switching medications may just involve starting a new medication and tapering the old medication. On the other hand, in individuals at significant risk of frequent convulsions or status epilepticus – these are back-to-back seizures that don’t stop – the doctor may advise hospitalization so that the medication change can be made safely. In most cases, medication switching can be done as an outpatient. More frequent appointments may be needed to adjust medication doses. In some cases your doctor may give a schedule of medication dose changes that should be implemented each week. In these cases doctor and patient should review written instructions to avoid confusion and incorrect dosing between appointments.

Summary

Achieving optimal seizure control while reducing side-effects often requires switching medications. Individuals with good seizure control on one medication usually – though not always – achieve good seizure control on other medications, so that the motivation for changing medications is often reducing or avoiding side-effects. Safely changing seizure medications requires taking into account the specific needs of individuals so that a “one-size-fits-all” approach to changing medications is not possible. On the other hand, close coordination and good communication between doctor and patient can significantly reduce the risks of switching seizure medications, and offers the best route to success.

The team at EFMNY would like to thank you for your questions! After each post, we’ll post answers from our experts to the most frequently asked questions we receive. Please note that these Q&A post, like our provider articles, should not be taken as medical advice. Each patient is unique. For medical advice regarding your specific condition, please consult your doctor.

1. I’ve heard that switching between brand drugs and generics can affect a change in seizure control and patterns. Is that true? Should I be concerned about using generics?

Switching between brand drugs and generics usually does not have an effect on seizure control. Unfortunately, there is no way to determine who will be affected by switching. The Federal Drug Administration (FDA) has set manufacturing guidelines for makers of generic drugs. The generic drug manufacturer must prove its drug is the same as (bioequivalent) the brand name drug. When a drug, generic or brand name, is mass-produced, very small variations in purity, size, strength, and other parameters are permitted. FDA limits how much variability is acceptable. Most people will not be affected by this variability but some are. If you are one of these people you can be prescribed the brand name and provide evidence of need to your insurance company with the help of your health care provider.

2. My daughter has experienced significant weight gain since she started taking seizure meds. While we recognize her concern, my husband and I are afraid that switching her medications will trigger more seizures. Do you have any recommendations for teens with epilepsy who have weight issues?

Healthy eating habits and regular exercise are encouraged for everyone but medications can cause weight gain even when eating healthy. If the weight gain is felt to be from the antiepileptic medication a change may be beneficial. There are ways to safely switch over to another medication and you can discuss how to do this with your daughter’s health care provider.

3. Although my seizures are well controlled with my medication, I do get headaches more often that I used to. Is this typical? Should I talk to my doctor?

Headaches can be a side effect from antiepileptic medications, although it is uncommon. Your neurologist can perform a headache evaluation and should be able to determine whether your medication should be changed.

4. It’s interesting to read that seizures may be reclassified. Will this have an effect on current treatments? How will patients learn about new classifications?

Epilepsy will continue to be treated with medication, surgery and diet. As we learn more about the cause of certain types of seizures there may be new treatment options that will be found effective. Classifications are helpful for medical personnel and scientists because they organize ways of looking at seizures and help create systems to study. Patients can learn about seizures and classifications by reading information from epilepsy organizations like the Epilepsy Foundation.

5. My son is being evaluated at school because his teacher is concerned that he is ADHD. I’ve noticed that he is zoned out a lot. Is it true that this could be a form of epilepsy and not ADHD?

Being “zoned out” is a common complaint of parents about their children and the cause could be a number of things, which includes seizures. An evaluation by a child neurologist will help determine if there is pathology involved. The most accurate way to determine if episodes of “zoning out” are seizures is to capture these events while the child is having an electroencephalogram (EEG) with video monitoring. When the event is captured the doctor can check the monitoring and see if the brain waves show that it is a seizure.

A neuropsychologist is a doctor who is able to test for attention deficit disorder. If the zoning out is not a seizure your child should have neuropsychological testing done to help diagnose the problem and recommend treatment. This testing can be done through the school system.

If in fact an evaluation has been made that confirms your seizure type has changed you may need to change medications. If you are now having seizures when they had previously been controlled it may mean that the medication you were taking does not work for the type of seizure you are now having.

A thorough evaluation is needed, as discussed in the previous blog, which will provide information about your new seizure type, why you are having a new seizure type, what this means in terms of controlling your epilepsy; and it will aid in choosing treatment.

Medications are usually the first line of treatment for seizures. They are chosen based upon seizure type. Your medication may need to be changed or a new medication may need to be added if your seizure type has changed.

The International League Against Epilepsy (ILAE) is currently proposing a new method to classify seizure types. Focal seizures are described according to the way they look to the observer. Seizures causes include genetic; structural/metabolic or unknown.

Below is a list of antiepileptic medications (drugs), commonly called AEDs, using generic names:

Some of these medications are used only for very specific seizure types while others may be used for a variety of seizure types. Your health care provider should discuss with you why one medication would be the best choice for you.

It may be that for you the medication does not control seizures. There are other options for treatment which include surgery, the use of the vagus nerve stimulator in conjunction with medication and the ketogenic diet is also a good treatment in certain situations.

The team at EFMNY would like to thank you for your questions! After each post, we’ll post answers from our experts to the most frequently asked questions we receive. Please note that these Q&A post, like our provider articles, should not be taken as medical advice. Each patient is unique. For medical advice regarding your specific condition, please consult your doctor.

1. My son had absence seizures for the better part of five years. Our doctor recently diagnosed him as seizure-free at the age of 13. He is eager to go off of his medication, but we’re afraid it will lead to a return of his seizures. How is it determined that one is “seizure-free.” Is this the same as being “epilepsy-free?”

Absolutely! Absence epilepsy is a condition of childhood and adolescence. The Majority of people with absence so to say “grow out it”. Only rarely will absence seizures accompany a person into adulthood. So , depending on your child’s age, he can become seizure-free.

However, it is possible that someone has epilepsy, and a longer EEG shows abnormal electrical activity. In the case of absence seizures, these electrical events need to be up to 10 seconds long before a clinical manifestation, in other words a seizure comes to light. Therefore, as long as your child hasn’t had any clinical seizures, and a longer EEG is unremarkable, it is safe to assume he has grown out it, and therefore is epilepsy-free.

As a general rule, after two years of seizure freedom and a normal EEG and imaging (MRI) it is possible in most patients to attempt weaning off anti-seizure medications.

2. To the best of my knowledge, my husband has been without seizures for a little over two years. He used to have convulsions. One of his co-workers recently told me that he’s been “spacing out” a lot at work. Could this be what you refer to as an absence seizure?

Episodes of staring in adults are most probably Complex Partial Seizures and not absence seizures. Absence is an uncommon variety of Primary Generalized Epilepsy and only very rarely accompanies a person into adulthood. More frequently, people have Localization Related Epilepsy that can cause partial seizures. When partial seizures cause change in alertness, they are called Complex Partial Seizures.

The goal of epilepsy treatment should be seizure-freedom. Therefore it is very important for him to discuss a plan with his epilepsy neurologist (epileptologist) to characterize these events and properly treat them. VideoEEG in an epilepsy center can be used to characterize these events.

If seizures are ruled out, other causes of “spacing out” like sleep disorders, concentration problems and so on should be considered.

3. My health coverage only covers the generic version of my drug. Although I have less seizures than I did without medication, I wonder if I could experience even better results with the brand drug. Should I talk to my doctor about this? Is there a way to get brand drugs covered under special circumstances?

Yes and Yes! The main disadvantage of generic versions of anti-seizure medications is that less drug possibly reaches the brain. Although they are all supposed to contain the same amount of active ingredient, the level of active medication in blood might be 10-20% less that with brand versions.

Various factors contribute to this substandard quality. These medications are manufactured in various countries. Lack of oversight and standardized procedures and varying environmental conditions are among the few to name.

Insurances might require pre-authorization. Your physician’s office needs to contact your drug plan and explain the need for brand medications. They might require a letter or a form from your physician. One of the following scenarios can occur: in best case scenario, your health insurance provider grants a pre-authorization and your co-pay is reasonable. In some cases the insurance might approve the usage of brand medications; however your co-pay might be unreasonably high. In worst case scenarios the insurances might not have those particular medications as formulary, and not approve the coverage at all.

Be sure to check with the manufacturing company of the brand medications and see if you qualify for any aide programs, provided by some companies.

4. I’ve been told by my doctors for years that I have refractory epilepsy. I’ve tried several combinations of drugs. However, I’m afraid of the risk involved with surgery. How do you recommend patients weigh the potential costs and benefits of epilepsy surgery?

The standard of care in 2012 is that if seizures are not well controlled after the proper use of two anti-seizure medications, it is very unlikely that a third or forth medication will change the outcome. This condition is called refractory epilepsy. Such people should be evaluated to determine if they are candidates for epilepsy surgery.

As the first step your epileptologist documents that the seizures have a clear source focus in video-EEG. A series of other tests, including MRI, PET-CT and SPECT will determine any other underlying abnormality in that focus. Neuropsychological evaluation, WADA test and Functional-MRI will determine how safe it is to have that part of brain surgically removed.

A multi-disciplinary team of epilepsy neurologists, neurosurgeons and psychologists help determine the risk versus benefit of epilepsy surgery in each individual case. Only after it is decided that the surgery won’t cause any deficits, it is a viable option.

5. When I was first diagnosed with epilepsy, I had grand mal seizures. I was terrified to leave the house for fear I’d have one in the wrong place at the wrong time. With medication, those seizures have stopped, but I seem to be having petit mal seizures now. My family wants me to try a new medication, but I’m afraid the grand mal seizures will return. Is this a possibility? Is there any way to know without switching?

The goal of the treatment should be seizure-freedom. With the right choice of medications and proper management this could potentially be achieved with minimal side effects. Altogether, about 60 percent of people with epilepsy will have good control of their seizures after the use of one or 2 anti-seizure medications.

If you have the diagnosis Primary Generalized Epilepsy, you might experience generalized tonic clonic seizures, also known as grand mal; as well as absence, also known as petit mal.

More frequently however people have Localization-Related Epilepsy, which can cause complex partial seizures. In any case you should consider consulting your epilepsy neurologist and pick the right anti-seizure medication. In most cases your doctor might need to add the second medication to the first, instead of simply switching it.

Generally there is no way of predicting if one anti-seizure medication works better than the other. However, certain medications are more appropriate for certain types of epilepsy.

6. I am a thirty-year-old woman. My seizures seem to take place just after my menstrual cycle. My medication is helpful, but I’m not seizure free. Is it possible that my condition will improve or worsen upon menopause?

This pattern of seizures is called “Catamanial seizures”. About thirty to 50 percent of women with epilepsy experience fluctuations in their seizure frequency due to changes in female hormones in the body. There are two main female hormones: estrogen and progesterone. Estrogen facilitates seizures and progesterone protects against seizures. Whenever throughout the life the balance between these two female hormone changes in benefit of estrogen, the seizures worsen. That is the case in certain times of the menstrual cycle.

It is advisable to keep a seizure calendar and correlate the frequency of the seizures with the timing of the menstrual cycle to detect this condition.

Various things can be done:

In some cases our doctor might recommend you to take slightly higher dose of your anti-seizure medications during those days.

In other cases addition of certain medications, only during these days is reasonable. Acetazolimide (Diamax ) is a so called “water pill” that helps specifically in this condition. Also Benzodiazepines , e.g.: Valium and Ativan have been used for few days per month.

If you are a candidate for contraceptive, your gynecologist might prescribe these medications to decrease the frequency of severity of hormonal fluctuations.

Additionally, certain long –acting contraceptive (Depo variations) can lower the frequency of menstruations to one in every three or even 6 months and therefore have a decrease in seizure frequency.

Finally natural plant –related progesterone preparations have been used in this setting. Your neurologist might coordinate these treatments with your gynecologist. Most probably your seizure frequency will decline after menopause.

Many people with epilepsy can experience changes in the pattern, frequency and nature of their seizures. Such changes might mean worsening of the disorder, improvement of the condition, or have no consequences.

A change might have various causes and various consequences for each person. The epileptologist (epilepsy neurologist) can help make this distinction with the help of an accurate history and by using diagnostic methods, e.g. electroencephalogram (EEG) or imaging.

Epilepsy Types and Seizure Types

To develop a better understanding of a change, it is wise to review the different types of epilepsy and different types of seizures. Basically there are two main types of epilepsy. Eighty percent of people have Localization-Related Epilepsy (LRE) and 20 percent have Primary Generalized Epilepsy (PGE).

In LRE, seizures start in one focus in the brain. This focus can cause a brief and simple partial seizure (SPS), which manifests in different ways, depending on what part of the brain is involved. If a SPS affects alertness, it is called a Complex Partial Seizure (CPS). CPS’s are the most common manifestation of epilepsy. Both SPS’s and CPS’s can propagate to involve the whole brain and cause a generalized seizure, also known as a “Grand mal” seizure.

People with PGE experience generalized seizures, which involve the whole brain at the same time. These can be tonic-clonic (grand mal), tonic, myoclonic, atonic, or absence (petit mal) seizures.

It should be noted that a generalized tonic clonic seizure, also known as a grand mal; can be the result of secondary generalization of a partial (or focal ) seizure, or the manifestation of primary generalized epilepsy.

Patterns of Change

Increase in frequency and severity of seizures:

Increase in frequency of seizures might be a sign of worsening of the condition. Refractory epilepsy (please refer to previous blogs) needs to be identified and addressed properly. Basically, in about 40 percent of people with epilepsy the seizures cannot be controlled with two or more anti-seizure medications. So a progression of the condition, as the epileptic brain gets used to the medications; is the number one and most important situation to identify. People with refractory epilepsy might be candidates for epilepsy surgery. The earlier such people undergo surgery, the better the outcome will be.

-It is also possible that the level of anti-seizure medications have declined. This might cause an increase in frequency and severity of the seizures. Multiple causes are possible:

This might be due to a change from the brand to generic formulations. Generic versions can deliver medications to the brain 10-20 percent less effectively.

A new drug interaction might also explain a decline in drug levels. For example, starting a patient on female hormones or birth-control pills can cause a drop in Lamotrigine blood level.

Absorption of anti-seizure medications might have become impaired. Diarrhea and vomiting are possible causes.

-Many hormones have various effects on the brain. Therefore, changes in the hormonal balance of the body can cause changes of seizures. Specifically, one of the female hormones, “estrogen” can worsen seizures, while another hormone, “Progesterone” improves the seizures. If the balance of these two hormones changes in favor of estrogen, e.g. around the time of menstruation, seizures can become more frequent and more severe. This condition is called “Catamanial Seizures”. Pregnancy and menopause can change this balance as well.

-Certain medications lower seizure threshold in brain and should be avoided in people with epilepsy, e.g.: some antibiotics including ciprofloxacin or levofloxacin.

-Rarely, psychological stresses and possibly a problem in coping with these stresses can cause psychogenic non-epileptic seizures (PNES) that can super-impose on epileptic seizures.

-Extremely rarely, starting a new anti-seizure medication can worsen seizures. This is an unusual reaction and only an experienced clinician should make that distinction.

-Finally, the course of certain types of epilepsy changes with age. Some types of PGE, for example absence epilepsy, only rarely continue beyond the age of 20 years.

Change in Seizure Type

-Localization-Related Epilepsy can cause SPS, CPS and GTC. If a person once had brief seizures with or without change in mental status and loss of consciousness, he/she has had SPS or CPS. Now, if this person starts experiencing GTC, this is a sign of worsening of the condition. However, if he/she used to experience GTC, and now is experiencing only SPSs and CPSs, then it might be a sign of improved control of the seizures. This can occur after starting a new medication.

-Primary Generalized Epilepsies can present with various generalized seizures. A new pattern of generalized seizures in such a case might not necessarily signify worsening of the condition.

-It is very rare, but at times people can have two different types of epilepsy causing both focal seizures and generalized seizures.

What to do? What to do?

-It is advisable to use a seizure calendar at all times. Certain characteristics of a seizure might be fresh in person’s memory or the witnesses’, but be forgotten later on. Documenting the events in as much detail as possible, and as soon as possible, helps the clinicians manage the condition better. In addition to description of seizures, other events, e.g.: menstruation, sleep deprivation and extreme stresses should be documented. A correlation between these events and the seizure frequency can help identify the provoking factors.

-The American Association of Epilepsy Centers recommends: if the seizures are not controlled after management by a general practitioner after three months, and by a general neurologist after six months, then the patient should be referred to an Epilepsy Center for work up and management.

-It is imperative that refractory epilepsy be diagnosed and addressed as soon as possible. Typically, if seizures aren’t controlled after proper use of two anti-seizure medications, a work-up should be attempted to evaluate whether the person is a candidate for epilepsy surgery, Vagal Nerve Stimulator or other alternative treatments.

-The gold standard in characterizing the seizures is capturing an event while a person is undergoing video-EEG epilepsy monitoring. Under very controlled circumstances and close supervision epileptologists record a seizure to examine and characterize its nature in EEG and to correlate these findings with the video recordings.

-A comprehensive history and the above-mentioned procedures assist in interpreting any changes in the frequency, severity or pattern of the seizures in every individual.